Feature Life at the bottom - Part 2

It’s been nearly 160 years since the first institution for people with mental retardation opened in the wing of a state school for the blind. Over the next century, families who could not, or would not, care for their mentally retarded children sent them to these facilities, which were initially thought to protect the vulnerable from the dangers of society, but in the early 20th century functioned to hide them from public view. “The feeble-minded are a parasitic predatory class,” proclaimed Walter Fernald, superintendent of the Massachusetts School for Idiotic Children (later the Fernald State School) in 1912. “They cause unutterable sorrow at home and are a menace and a danger to a community.”

In 1967, the number of people in private and public institutions peaked at nearly a quarter of a million people. Among them were San Antonio residents Amy, Rix, and Steve who, in their late ’teens and early ’20s, were living in Texas state schools. Yet in the past 35 years, social, legal, and political forces have moved national policy toward deinstitutionalization. By 1997, only 57,000 people in the U.S. lived in institutions, including more than 5,000 in Texas. (See box, page 13.)

Today, state-school opponents cite eight states that have closed their public facilities for the mentally retarded and rely solely on community-based services: Alaska, the District of Columbia, Hawaii, New Hampshire, New Mexico, Rhode Island, Vermont, and West Virginia.

Armando:love and happiness

When Brenda, then a physical-therapist technician at the San Antonio State School, began caring for Armando in a rehabilitation program, she didn’t know that someday she would be his foster mother and legal guardian. But in May, Armando, who had lived in state schools, including San Antonio’s, since he was 4, moved in with Brenda. “I met him and even other people said he had an attachment to me,” she recalls. “A bond is there.”

She shows me pictures of Armando dressed as Count Dracula at a SASS Halloween party, as a teen sitting in a kiddie pool, and relaxing in his recliner with a toy.

Although he is one of seven children, “all he’s known is institutions; he’s never known family,” says Brenda, who resigned from SASS in 1998 and now works for a private home-health-care company.

As a 1-year-old, Armando suffered a bout of meningitis that left him profoundly retarded and with uncontrollable epilepsy. He can suffer as many as 100 seizures a day and functions at the level of a 12-to-18-month old. He doesn’t speak, but he’s quite expressive, using different sounds, laughs, and facial expressions to communicate. “He doesn’t know anything is wrong with him. This is normal to him.” FULL STORY

Seguin native Rod Moline is the director of Alaska’s Department of Senior and Disability Services. In 1997, fiscal concerns prompted Alaska to close its only state school, Harborview, which had 45 residents. While Alaska’s general fund paid for state-school residents, when Harborview closed, the funding stream changed and the federal government covered 50 percent of the cost for home-based waiver programs.

“A lot of families don’t want to hear about finances,” he says, “but the legislature says, What does it cost?”

Moline says Alaska used the savings to remove people from the waiting list for community-based programs and to provide services to the previously unserved.

However, the last people to leave Harborview were the sickest and costliest residents. In the community, they need more services, such as apartments with 24-hour care. “There will always be persons for whom some kind of institutional care will be necessary,” Moline says, adding that some semi-independent living arrangements have segregated residents who are accustomed to being with other people from their community.

“There can be a forced emotional isolation that takes away from the quality of life,” Moline says. “We continue to struggle with it. But overall, the closure has been a fiscal and philosophical success.”

In New Mexico, a 1992 class-action suit forced the state to close its two large institutions, Fort Stanton and Los Lunas, which together housed 377 residents. The court ruled that it is a civil-rights violation to require people to live in state institutions in order to receive services.

Cathy Stevenson, deputy director of long-term services at New Mexico Department of Health, says as a result of the closures more mentally retarded people are receiving community services, including supported employment and assisted living, and federal funding has eased the state’s financial burden. The state also has limited group homes to four or fewer residents and doesn’t license homes with more than six beds.

When the state closed the institutions, the public outcry was vehement. “Many people were very opposed to closing them,” says Stevenson, who at the time had a 4-year-old developmentally disabled daughter. “They thought the medically fragile couldn’t be served. Aging parents were very fearful of what happens to their kids, and many people thought they got good services at state schools.”

Stevenson says that while “the vast majority of residents’ lives have improved,” New Mexico also grapples with caring for the medically fragile or those with severe behavioral problems. “They need a lot of funding and residential care. We have a handful whose behavior is at the criminal end of the spectrum. We don’t have a place that suits their needs.”

While states that closed their institutions consider the move financially necessary and socially beneficial, it should be noted that none of the eight states had a large state-school system. West Virginia closed its four schools, which housed 390 residents; most states had one or two schools. And, in Washington, D.C., city health officials launched a probe into many group homes after the Washington Post uncovered rampant abuse in them.

In Texas, such an undertaking would require providing community services for 5,000 people. State Representative Truitt says that after Texas closed the Fort Worth and Travis State Schools as a result of a class action suit, she saw former residents of those facilities living in the streets. “I’m a firm believer in community-based services,” she says, “but I don’t think we should do away with state institutions. After the court case, not everybody fell into a safe place.”

After receiving a routine immunization at age 2 1/2, Rix developed a high fever and doctors later determined he was mentally retarded and autistic. A resident of the San Antonio State School, Rix went blind as an adult, but he remained active. Here, he is feeding a deer near Fort Sam Houston. (courtesy photo)

But Liz, a state-school opponent who found foster care for her 34-year-old son, Scott, says that adequate community-based services must be established before institutions are closed. “I’m not talking about dumping people,” she emphasizes, “but the medically fragile should be given a chance to reach their potential. It’s not an excuse.”

State-school opponents also say that the way mental-retardation services are funded needs to be overhauled. Public and private institutions and some group homes are classified as Intermediate Care Facilities for Mental Retardation; they receive federal and state funds based on how many beds are filled. Under ICF/MR funding, when people leave a home or institution for foster care, the money doesn’t follow them, but rather stays with the home or institution, which can fill the vacancy with someone else.

A second major funding source is known as Home-Based Care Service Waivers, or HCS. These waivers pay for services necessary to help people live independently or semi-independently in the community, including day programs, health aides, respite care, physical therapy, adaptive equipment, transportation, home modifications, and case management. In this case, the money always follows the individual, from a foster-care family to an HCS group home to a private apartment.

Opponents of state schools and large institutions argue that when faced with budget deficits for mental-retardation services, it’s fiscally prudent to serve people on HCS waivers; the average annual cost for a state-school resident can be as high as $100,000; for an HCS waiver it averages about $38,000.

Parents such as Liz, whose son Scott uses an HCS waiver to receive foster care, say the waivers not only are cheaper, but also allow parents and guardians more quality control over services. “If I don’t like a provider, Scott can leave and still be funded,” she says. “They’re hired by me.”

State-school opponents say that long waiting lists, sluggish discharge plans, and lack of information about community resources make it difficult for the mentally retarded to leave institutions. Sherry Hartsfield of Advocacy, Inc. in San Antonio alleges that SASS’ discharge teams comprised of doctors, psychologists, social workers, parents, guardians, and occasionally the mentally retarded person drag their feet on transfers. A majority of the discharge team has to agree the resident is ready for the community; Advocacy often appeals the decisions. “I haven’t won one yet,” Hartsfield says.

Savage disagrees, citing statistics that show 20 state-school residents have been placed in the community since August 2003; two returned to SASS.

“We have some clients that don’t make it and come back,” he says, “but it’s never a done deal that you’ll always live here.”

Texas' state-school population

YEAR

STATE SCHOOLS

STATE INSTITUTIONS*

TOTAL

1967

10,399

1,509

11,908

1977

12,132

461

12,593

1987

7,915

0

7,915

2000

5,338

0

5,338

*Prior to 1987, some people with mental retardation and mental illness were housed in institutions for the mentally ill.

Source: Mental Retardation, December 1998; University of Colorado, 2002.

Number of persons in Bexar County with mental retardation

Total

40,229

Mild

34,335

Moderate

4,421

Severe/profound

1,472

Source: Department of Aging and Disability Services

Number of individuals served by residential setting

Facilities with 1-6 residents

7,313

7-15 residents

550

16 + residents (includes state schools)

10,721

How Texas’ treatment of the mentally ill ranks among 50 states and Washington, D.C.

CATEGORY

RANKING

Total spent for all MR services

42

Community placements

51

Number of people in homes with 1-6 residents

48

Public spending for community long-term services

40

Source: Disability at the Dawn of the 21st Century by David Braddock. Data is for 2000.

Brenda, whose foster son, Armando, was a long-time SASS resident, says missing paperwork, miscommunication, and other bureaucratic snafus postponed his discharge from SASS for one year. A former SASS physical therapist, Brenda says that, although she is Armando’s legal guardian, she often wasn’t invited to team meetings to evaluate his readiness to move into the community. “The whole system does not make it easy.”

And in private institutions, Hartsfield says, residents can also get lost in the system. In one case, she says, a resident who lived in a facility owned by a private corporation was transferred from Houston to West Texas; her family wasn’t notified and the resident couldn’t give legal consent.

Legally, an Advocacy, Inc. representative is allowed to attend residents’ annual meetings, known as staffings, to provide parents or guardians of state-school residents with information on community options. Without Advocacy’s input, Hartsfield says state schools and private institutions don’t offer residents community options. This issue was raised during the legislative session, when one bill required institutions to inform their residents of community options and another bill required mental-health authorities to tell people about the state schools.

But some parents view Advocacy’s presence as a high-pressure tactic. “It’s a real anxiety-provoking activity,” says Elizabeth. “Local parents developed a packet of information so people could hold their own against immense pressure.”

“They ask me,” says Betty, whose 53-year-old sister Barbara has lived at SASS for 10 years, “and I tell them, You can leave.”

After two legislative sessions, a consultant’s study, and lobbying from groups on both sides of the state-school issue, Texas is only incrementally solving its fiscal and philosophical crisis over mental-retardation services. Funding shortfalls persist, services remain scattershot, and the debate over the appropriateness of state schools endures.

“I wish ARC and PART would stop fighting,” says State Representative John Davis, referring to the Association for Retarded Citizens and the Parent Association for the Retarded of Texas, who disagree over whether to close state-schools. “It’s about those people with mental retardation.”

For those who haven’t cared for the mentally retarded, it is impossible to comprehend the anguish and joy that accompany the undertaking. However, in bureaucratic discussions about dollars, beds, and waivers, it is vital to remember that the mentally retarded are people. As a society, we must guarantee their civil rights, ensure their care, and never diminish their value as human beings. •